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Aim To present the cross‐case comparison component of a qualitative study exploring and describing the experiences of adults with an intellectual disability who have received trauma and orthopaedic hospital care for musculoskeletal conditions or injuries in the United Kingdom. Design A qualitative, exploratory study was conducted using 1:1 semi‐structured interviews to describe the lived experiences of trauma and orthopaedic hospital care from the perspectives of people with intellectual disabilities and a carer of a person with profound and multiple intellectual disabilities. The data were analysed using interpretative phenomenological analysis. The Standards for Reporting Qualitative Research guidelines were applied. Results There were common and interconnected experiences across the five participants: communication challenges; lack of person‐centred care; issues related to pain management; lack of confidence in hospital care; the valuable support and expertise of carers; and incompetence of hospital staff and isolation and loneliness.
Aim To present the cross‐case comparison component of a qualitative study exploring and describing the experiences of adults with an intellectual disability who have received trauma and orthopaedic hospital care for musculoskeletal conditions or injuries in the United Kingdom. Design A qualitative, exploratory study was conducted using 1:1 semi‐structured interviews to describe the lived experiences of trauma and orthopaedic hospital care from the perspectives of people with intellectual disabilities and a carer of a person with profound and multiple intellectual disabilities. The data were analysed using interpretative phenomenological analysis. The Standards for Reporting Qualitative Research guidelines were applied. Results There were common and interconnected experiences across the five participants: communication challenges; lack of person‐centred care; issues related to pain management; lack of confidence in hospital care; the valuable support and expertise of carers; and incompetence of hospital staff and isolation and loneliness.
Qualitative research with gifted youth presents unique challenges because of their tendency to display qualities such as perfectionism, overexcitability, and asynchronous development. Studying gifted youth in cultural contexts marked by high power distance between young people and adults can further compound these challenges by limiting gifted youths’ feelings of psychological safety during data collection. As a result, gifted youth often withhold information or give perceived culturally appropriate answers to adult researchers’ queries. Drawing on a larger phenomenological study of the formation of self-concept among eight Malaysian gifted youth aged between 18 and 25 years old, this article describes how an innovative application of combining semi-structured interviews with WhatsApp social messaging diaries helped minimize the power imbalance between the researcher and youth participants. The paper describes the unique methodological strategy of combining in-depth phenomenological interviews with WhatsApp diary entries to collect data from a hard-to-reach population. Specific techniques employed included using a conversational interview style, self-disclosing personal information to build trust, and validating participants’ feelings and experiences are discussed. Open-ended WhatsApp diary prompts and an extended time provided a sense of anonymity which allowed participants to recall their past and discuss sensitive experiences. Combining these techniques facilitated in-depth exploration into the lived experiences and challenges of being gifted, and how giftedness shaped participants’ self-concept. This is the first known study to document the use of social messaging applications as an effective journaling method for creating a familiar and safe space for special needs groups in high power distance cultures to share their experiences and feelings.
Background The hospitalization of infants in the neonatal intensive care unit (NICU) is an ethically challenging situation. A limited number of studies have extended the concept of moral distress to parents of infants hospitalized in the NICU. This topic requires further investigation. Methods The present prospective qualitative study was conducted from February 2023 to May 2023. Data were collected through semistructured in-depth interviews, which were conducted in-person with fifteen parents of infants who were hospitalized in the NICU at the time of the interviews. Purposive sampling was used. The data were classified and analyzed using thematic analysis. Results Three themes emerged from the data analysis performed for this empirical study. One intrapersonal dimension featuring two aspects (one dynamic and one static) and another interpersonal dimension focusing on parental moral distress emerged from the data analysis. Furthermore, seven subthemes emerged across these themes: (1) self-directed negative feelings were experienced by parents due to their inability to fulfill their caregiving/parental roles; (2) intense internal conflict was experienced by parents in response to a moral dilemma that was difficult, which was perceived as irresolvable; (3) objectively unjustified, self-directed negative feelings of guilt or failure were experienced by parents; (4) parents experienced moral distress due to the poor image of the ill infants; (5) inadequate information may predispose parents to experience moral distress (6) neonatologists’ caring behaviors were unduly perceived by parents as paternalistic behaviors; (7) reasonable or justified institutional rules were unduly perceived by parents as constraint. Conclusions In general, the results of this study support the integrated definition of parental moral distress proposed by Mooney-Doyle and Ulrich. Furthermore, the present study introduces new information. The study distinguishes between the dynamic and static aspects of the intrapersonal dimension of the phenomenon of parental moral distress. Moreover, participants experienced moral distress because they unduly perceived certain situations as causing moral distress. In addition, inadequate information may predispose parents to experience moral distress. The findings of this study may contribute promote family-centered care in the NICU context.
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